10 Things You Didn’t Know About Narcolepsy

by julie on March 7, 2014

In honor of National Sleep Awareness Week, the top 10 things you didn’t know about narcolepsy:

10. It’s not like the moviesRat Race, Deuce Bigalow: Male Gigolo and Moulin Rouge feature comical characters with narcolepsy. Falling asleep mid-sentence may happen in real-life, but it’s not the typical everyday experience. Narcolepsy is more than sleepiness, involving other serious symptoms and it’s not a joke.

9. People with narcolepsy do NOT sleep all the timeIndividuals with narcolepsy may fight sleepiness during the day but be unable to sleep at night. “Disrupted nighttime sleep” is a major symptom of narcolepsy.

8. Emotions may cause paralysisEveryday emotions like laughter, surprise or annoyance may cause temporary muscle paralysis (knee-buckling, head dropping or collapsing to the ground unable to move). This is cataplexy, a scary symptom unique to narcolepsy. (Not everyone with narcolepsy has cataplexy.)

7. Napping is not a luxuryPeople with narcolepsy are not “lucky” to take naps, they are experiencing extreme physical sensations. Napping is often inevitable, unwelcome and difficult to plan for in most school or work settings.

6. Terrifying HallucinationsEver woken up but been unable to move your body? This is sleep paralysis, which happens to 1/3rd of all people, but happens more frequently in narcolepsy. Sometimes accompanied by visual, auditory or tactile hallucinations as REAL as reality. This redefines “living a nightmare”.

5. Doctors don’t know narcolepsyAccording to a recent study, 91% of primary care doctors and 58% of sleep specialists are NOT COMFORTABLE diagnosing narcolepsy. Only 22% of sleep specialists could name all five major symptoms. As a result, people go undiagnosed for 3 to 25 years. Misdiagnoses include epilepsy, depression, and schizophrenia.

4. Sleepiness doesn’t always LOOK sleepyNarcolepsy’s sleepiness may manifest as hyperactivity, irritability, moodiness, attention deficits, fogginess, or memory problems. These behavioral and cognitive changes are very real, but not what we think of “sleepiness” – i.e. droopy eyelids, yawning or nodding off.

3. Neurological disorder without a cureNarcolepsy is believed to be an autoimmune neurological disorder, caused by the gradual loss of neurons (called hypocretin or orexin) which help regulate waking, sleeping and dreaming. There is currently NO cure or replacement for the lost neurons. Patients manage with multiple medications and diligent attention to their health and schedules. No two cases of narcolepsy are exactly alike – what works for one patient may not work for another.

2. Sleepiness is NOT lazinessImagine not sleeping for 2-3 days straight. That’s how a person with narcolepsy feels daily. This sleepiness is neurological and uncontrollable and is not a sign of laziness or lack of will power. If I felt like being lazy, I would watch TV or play games. Sleep is not all that fun, I don’t even remember it.

1. You know someone with narcolepsyNarcolepsy affects 1 in every 2,000 people – 200,000 Americans and 3 million people worldwide, including many children. Narcolepsy is invisible, we may look “healthy” on the outside while fighting internally or behind closed doors. Misperceptions cause many to keep it private. Yet, people with narcolepsy are your friends, neighbors and colleagues.

I printed this out to take to the school with me on Tuesday. I am going to educate the staff on my daughter’s condition. I am going to let them know about me as well but this is mainly about getting her what she needs to function at school. Thank you!

Thank you so much for sharring all this information with everyone. My son is 18 years old and was diagnosed with narcolepsy his last year of high school. We struggled with school when he started high school. I thought he was staying up all night playing xbox and on the computer, so I would take everything away from him. The school was calling me all the time telling me he feel asleep in class. I would take eveything away from him by 10 pm, I couldnt understand how he was falling asleep in class. Every morning was a strrugle getting him up. He cant hear the alarm clock so I have to wake him. Boy did we have some fights. i would leave for work when I thought he was up. I would call him when I got to work and most of the time he fell back to sleep. I would have to leave work to go home and get him up for school. I finally took him to the dr and told them I need to know if something is wrong with him or if he really is a bratt thats staying up all night. He is on medicine right now but he still cant wake himself up. I see him struggle and I wonder how things will work out for him, he does curently work part time and has signed up for collage in the fall. We are working with his dr because he is sleeping 16 hours a day. The doctor tells him he needs to make himself get up. He tries very hard to explaine he can’t. I’m stuck in the middle because I can see what they are both saying. Reading what you have shared has made me think of questions I need to ask the dr. I’ll be reading your book hoping to educate myself so I know what my son is going through.

Where do I begin?!? THANK YOU, THANK YOU, THANK YOU…..
My daughter was diagnosed with Narcolepsy without cataplexy in January of this year. She was just starting middle school (6th grade, age 12) when the teachers started calling questioning my parenting skills related to her bedtime… “what time is she going to bed” they would ask. I would answer, “usually 7pm… she sleeps until 6-7 a.m the next morning!?!”….
That is where our journey began in terms a diagnosis. I was thinking sleep apnea because she has always been a sleeper…she just wasn’t rested after sleeping. I mean, no one sleeps unless they need it? LOL After multiple physician referrals ( 6 months worth) and my insistance that there was “something causing” the symptoms we were experiencing, we received her diagnosis!
Now what? I cannot tell you how many hours I have spent researching this disease, 504 plans, medication options, etc.

You and your website info should be handed to anyone diagnosed with Narcolepsy!

With that said, you have further energized me in knowing that Advocacy is key. My daughter is now 13, we are still working on her medication, we are now at a different school (Different school system, altogether) and I feel so fortunate just knowing that we have information, we have options, and we have control! We just have to bring everyone else around us up to speed

For Valencia that posted in April 2014…. I work as a Human Resources Director, and much like the 504 plan in schools, there are some Federal Acts that protect you as an Employee. Since Narcolepsy in recognized by the American Disability Act, you may qualify for some work accomodations as well as Family Medical Leave Act that protects you job if you need to be absent or late due to your medical condition! I’m not a blogger, but I am more than willing to share my insights

Julie, you are a Angel… I hope to meet you at the NN convention in Denver.. Keep doing what you are doing and being a resource for us all!

I have narcolepsy and cataplexy, mine showed up after a severe motorcycle wreck, crushed spine in 3 places.I have had to deal with it for 34yrs now, I don’t take drugs as they either didn’t work or the side effects to me weren’t worth what they did for me. I have found that paying attention to diet helps a lot. Controlling emotions is a large help but hard to do at times. If I were to want to stress a point it would be don’t let the Dr have full say of your treatment reserve the right to set the quality of life for yourself, and don’t be afraid to fire a Dr that won’t listen to you